Orthotics play a critical role in SMA treatment
Asher is an amazing 2-year-old little boy who has already faced many obstacles in his young life. Within a month of being born, practitioners noticed pronounced muscle weakness. After consultation with neurologist, Asher received a diagnosis of Spinal Muscular Atrophy (SMA), Type 1, at exactly one month old.
Immediately after being diagnosed, Asher contracted a cold. Complications led to a total of six months in the hospital for Asher. During this time, Asher received a breakthrough treatment for SMA called Spinraza. He also worked frequently with physical, occupational, and speech therapists to maximize his potential to gain strength.
When he entered the PICU, he had virtually no muscle movement. But by the time he left the PICU, he had begun using his hands, arms, and feet. And when he was ready to come home, Asher began sitting for short sprints with assistance and bracing. Since coming home over a year ago, Asher has continued to grow and thrive.
Orthotics have had a significant impact on Asher’s progress. Mellissa Frietchen, orthotist and practice manager of Transcend’s Springfield office, has seen Asher’s fighting spirit firsthand. “When I first met Asher, he couldn’t sit up. He couldn’t hold his head up. He has come so far. In addition to bilateral, solid ankle AFOs, Asher wears two different types of TLSOs. He uses a bivalve Surestep TLSO at home. This two piece design makes donning and doffing easier, as well as enhances the adjustability of the orthosis. With a stabilized trunk, Asher is able to work on head and arm control. To provide a different dynamic during therapy appointments, he wears a Benik back brace.
The bracing Asher uses daily gives him opportunities to sit and stand – assisted and, now, at the right times, unassisted. Asher has learned to propel a manual wheelchair and, because he has comfortable orthoses, he favors being upright – where he can chase his brothers and choose his own way forward, just like any toddler should be able to do.
Asher’s dad, Kory, is thankful for the progress that Asher has made. “The staff at Transcend is top-notch. They are personable, careful, and genuinely concerned about Asher’s overall health. They care about what our therapists and doctors say, and they listen to our opinions, too. Asher is lucky to have them on his team. Melissa has been an absolute rock star at customizing his orthotics to fit his level of ability and activity, especially being careful to address chronic GI and respiratory issues while still keeping the braces functional.”
Asher took another amazing leap forward after receiving a second groundbreaking medication in the fall of 2019, a gene therapy drug called Zolgensma. Less than a month after receiving it, Asher was beginning to sit independently, busting through the traditional milestone barrier for his diagnosis.
Less than a decade ago, Asher’s diagnosis would have been considered terminal. Today, his continued progress is a lesson for each member of his care team and a testimony to perseverance and the hope to be found in advancing treatment plans.